Warning! Bad language!!
If you haven't seen the video you are out of luck-I refuse to link to it.
That being said:
I come home from work the other day, no kids, no husband and figured I'd catch up on the online community. To my utter disgust I see that Autism Speaks has struck again with their atrocious video "I am autism". To my complete dismay I also note that this horrid video has already aired to the world, further muddying the waters of understanding and acceptance of those who are autistic.
I am, on one hand, somewhat impressed. The video is quite well done (several clips merge together to depict a wide variety of persons who are autistic). On the other hand,the music plays much like the blairwitch project, leaving a bad taste in my mouth. The voice over narrative is quite disturbing-the voice itself deliberately unpleasant.
But that isn't even what has me sitting here going "what the fuck!". It's the narrative itself. (copied and pasted from a variety of websites already adding their thoughts on this dramatic piece) Narrative in blue. My thoughts on this gross misrepresentation in black.
man: I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late.
Ok... Lets look at this rationally shall we? First of all, you cannot SEE autism. You can notice the stims and behaviours but far as I know autism does not come with visual identifiers. No special birthmark, no physical characteristics where one can say "all persons who look like ________ or have this __________feature are autistic. All persons without these are not autistic". So please, autsism squeaks, stfu if you are going to spread such bullsh*t. Secondly... Until it's too late? Too late for what? How is it too late? for that matter, are you saying that autism masks itself to prevent being destroyed? How unsuprising that autism pipsqueaks use such fear mongering in their opening. Beware!! Before it's too late!! whatever...
I know where you live, and guess what? I live there too. I hover around all of you.
Last I checked, lines like that are considered stalking. Are we implying that some autism gremlin or spirit hovers in the air watching us, and if we are not vigilant BAM!! swoops into our children and takes them over? Does this remind anyone else of Hitler's propaganda? Not even through the first paragraph and already this has the flavour of discrimination-encouraging others to hate and fear someone for their label. (By the way, in my oh so jaded opinion, trying to make is sound like a person who is autistic can be summed up with the label autistic as if that is the whole of them is beyond ignorant)
I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.
Wow! Notice how the concept of not recognizing race or religion as identifiers (which is one of the ways to look at being non discriminating) is now lumped with having no morality! Nice job there. And no currency? WHAT? WTF does that mean exactly?
As for the speaking my language fluently, you sure the hell do not. You, Autism Speaks, only speak in the language of fear mongering, misrepresentation and degredation. Not my language at all.
And of course, let us not ignore the implication that all autistics are non verbal. Unfortunately I agree in part-only because thanks to organizations such as AS the voices of those who ARE autistic are being overwhelmed by the voices of asinine beliefs, propaganda, proffiteers and politicians.
I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.
Oh nice, I suppose they stole that line from AoA. Isnt that where one goes if one wishes to read the fantasy of autism being compared to fatal diseases?
I am not big on ill wishing, but I truly think some of the persons who like to throw around these implications that Autism should be compared with aids, cancer etc should have to live through dealing with having their beloved ones suffer through such things.
Faster than pediatric aids? Nice fear imagery. Completely innacurate mind you, but A+ on the drama. This infuriates me. Not once in my child's 11 years have I EVER thought of comparing autism with cancer, aids, diabetes...
And if you are happily married, I will make sure that your marriage fails.
This is an incredibly stupid comment. Autism does not cause a marriage to fail. Neither does a child with autism cause a marriage to fail. Marriages fail when the persons in the marriage (the adult couple) can not work together. Period. Statistically LESS people with a child diagnosed with a disability end up divorced that persons with no children diagnosed with a disability. My marriage failed, but it was failing way before the little man was a concept. While the adults that tend to handle stress by becoming angry, accusatory etc may indeed find that their marriage does fall apart after finding out their child is autistic-it still is not the diagnosis or the child that wrecks the marriage. It is the adults in the relationship that trash said relationshiop. End of story.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
Finally some truth! If you decide to hand money over to organizations such as Autism pipsqueaks then yes! you most likely will be bankrupt! These organizations will encourage you to donate (only WE are doing the research that will SAVE your child!) to buy their products (the secrets to curing your child that your doctor wont tell you because we are full of shit!) go to their conferences and seminars (Because only through us can you cure your child!). If you fall for the "OMG your child is autistic??? Life is over!! Its TRAGIC, you have to WIN the FIGHT, be a WARRIOR MOM, GFCF, HBOT, LUPRON, CHELATION etc myths and scientifically proven UNSOUND nonsense (woo) then yup! You can expect to be financially devestated. (Not saying that the extra help does not cost way more than it should, or that insurance does not cover as much as it should, but the only people/organizations that are taking your money for self gain are the cons and quacks). My son has POPARD group, speech, social skills training, special help at school. So far mostly covered. Less expensive than putting him in hockey.
I don't sleep, so I make sure you don't either.
Never sleep huh. My son sleeps. So do I. Again beautiful work to be sure that ALL persons on the Autism Spectrum are lumped together as ALL having sleep disorders. I lost more sleep with my second child who was colicky than I did with little man.
I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.
FUCK you Autism Squeaks! It is impossible to have children and to not have them behave inappropriately at some time. While some children (be they autistic or ODD or a zillion other things) struggle more with public excursions, many autistic children are well able to go on such outings-when their needs are understood and accomodated. My own son needs to have warning (such as a schedule), an understanding of what the outing is about and what is expected of him, adequate snacks and water to last the outing and realistic expectations from the adults with him. I practice understanding the need for some stimming and he practices understanding that the stimming needs to appropriate for the location (no walking in circles in the parking lot please).
So what? A little bit of planning and understanding, oh noes!
You have no cure for me.
Duh, autism isnt a disease, or an illness. It is a neurological difference.
Your scientists don't have the resources, and I relish their desperation.
Sigh. Now autism also has feelings, goals and what not. What to personify!
Also, the scientific community lacks resources for much of the needed research for many things. But they are making progress at identifying the genetic implications-check out the autism science foundation for the long list of research etc.
Your neighbors are happier to pretend that I don't exist, of course, until it's their child.
My neighbours adore my son. He is honest, earnest and endearing. Mind you, if organizations such as Autism Pipsqueaks continues to misrepresent autism on such a gross scale, usimg their fear and hateful propaganda with public announcements such as this nasty video, I am sure people are going to want to run and hide! What a pile of crap.
I am autism. I have no interest in right or wrong.
This really offends me. This is the number one line on my hate list for this video. Excuse me?? Are they actually implying that being autistic means having no morals? My child thrives on rules. He gets the school's citizenship award every term, as he is not only understanding right vs wrong, but upholds his very strict moral code. So long as the rule is explained to him. (yes he does need to be given the information, from what the rule is to why it is). I know more adults who are nt than autistics that are morally decrepit.
I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.
Again, beautiful dramatization implying that the evil spirit autism just thrives on fear, anguish etc. AS and AOA and SM all work very hard to take away our hope, to maintain a level of anxiety, fear and terror in parents whose children are diagnosed ASD-this is how they make their money. And wrap up the opening narritive with a threatening tone, awesome. (not)
Now this next part is great! Parents demonstrating their maturity by tossing some threats of their own at the evil spirit autism. They will not sleep! They will fight!!
What are they fighting ?? Autism! go go warrior parents! fight the label! Fight the diagnosis! Make your child feel unloved, unworthy, unvalued. GO GO!!
woman: And to autism, I say...
man: I am a father...
woman: A mother...
woman: A grandparent...
man: A brother...
woman: A sister...
man: We will spend every waking hour trying to weaken you.
woman: We don't need sleep, because we will not rest until you do.
woman: Family can be much stronger than autism ever anticipated, and we will not be intimidated by you...
woman: ...nor will the love and strength of my community.
man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
woman: Autism? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers...
all: ...and daughters, and fathers, and sons...
(crosstalk: several people calling out "We are" and the names of different countries)
all: We are the United Nations.
man: We are coming together in all climates.
woman: We call on all faiths.
woman: We search with technology...
woman: ...and voodoo...
See? promised they would show their true colors! They are searching with voodoo!!
woman: ...prayer and...
man: ...herbs...
man: ...genetic studies...
woman: ...and a growing awareness you never anticipated.
man: We have had challenges, but we are the best when overcoming them.
woman: We speak the only language that matters:
all: Love for our children.
woman: Our capacity to love is greater than your capacity to overwhelm.
woman: Autism is naive.
woman: You are alone.
man: We are a community of warriors.
all: We have a voice.
woman: You think that because some of our children cannot speak, we cannot hear them. That is autism's weakness.
woman: You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands.
man: You have not properly been introduced to this community...
all: ...of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, and scientists.
woman: Autism, if you are not scared, you should be.
man: When you came for my child, you forgot:
When you came for my child?? wtf! I have to say the cadence is nice though. The monster vs the parents, and because we love our children we will fight the good fight. I get it, but it just so does not apply.
Autism is not a bogey man. It is a word that represents the neurological differences between a two groups of people. It loosely represents at that!
Autism is the label you fight for so that the services your child will need in order to reach their maximum potential will be available. It is just a word though. Your child is still there, still needing your love. He / she still has hopes, dreams, fears, worries, thoughts and feelings. Their behaviours may seem unexpected at times, but this is not evil! what the (stream of curses) are the A.squeaks people thinking?
all: You came for me.
woman: Autism: Are you listening?
Thursday
I am blaming the bunnies!
Summer is nearly over and I am not too sure where the time went, exactly.
My to-do list was not even touched. We never did get around to putting in the vegetable garden, or bringing in sand (for a base for our huge outdoor pool). My flower beds are sparse this year and the many woodworking projects remain incomplete.
I did not end up taking that three week course I had planned on, nor did we get to travel.
It's interesting, and sometimes frustrating, how life hands you little surprises to wreak havoc on even the best laid plans.
And really, it all started with the bunnies. We had not planned on bunnies. Nor had we planned on building a hutch for the bunnies. We most certainly had in no way planned on having baby bunnies.
Yet bunnies we have. Adorable bunnies that I have completely fallen in love with. Bunnies that have brought us so many giggles (watching the kids and hearing their conversations has been a hysterical daily event), many worries (Poor Trixie trying to give birth while Copper was trying to have his wicked way with her followed by 'Is Trixie feeding those babies?') and many profound moments.
As life around me went from my normal organized style to complete mayhem, as the family drama unfurled it's sails and docked on my doorstep-well, we still had the bunnies.
Watching my children interact and care for these fuzzy little creatures more than made up for the other nonsense. While watching the Little Man struggle to read the vast material he scrounged up at the library on bunnies did not take care of the court case I have pending concerning my infant nephew-it did serve to remind me of how much the Little Man has gained this year. He can read! And he is nurturing a group of small creatures with love and patience, demonstrating his newly learned life skills. And while the giggling over his sometimes innapropriate fact sharing on said bunnies did not give us back his funding (CLBC removed his funding because his IQ tested 'too high'), it did serve to remind me that some of his weaknesses are also his strengths.
I look at the space in our yard where the veggie garden was supposed to reside and I blame the bunnies! Who has time to frame in, roto-till and plant when one is cuddling a tiny playful bunny?
I look at the stack of birdfeeders, windchimes, potato bins and what not that I never finished building and I point my finger at the bunnies! Not my fault! I was building hutches and nesting boxes and bunny runs!
I look at the pile of paperwork on my desk and sigh. Don't be mad teacher. Maybe if I send a picture of the baby bunnies and my son's wonder filled face as he watched the mommy groom the little ones it will be ok.
Hopefully she has also experienced abduction by bunnies so that she understands.
Anyways,
I'm off to play with baby bunnies. Then I guess I have to finish some to-do lists.
hmmm, wonder if I can blame the bunnies for that bill I forgot to pay?
Hugs and laughter
Monday
Updating Links
There are some great websites out there! Here are a few of my favorites: (not all!)
Forum:
Raising Autism
Facts:
Canadian Autism Intervention Research Network
Autism Science Foundation
Science Rocks
Facts with Flair:
StopJenny
RespectfulInsolence
Blogs:
Countering Age Of Autism (Here you can follow rebuttals that AoA censored, and post your own)
Autism Herd
Autism Nostrum
A view from the boundaries
Surviving Motherhood
A touch of Alyricism
Gonzo
Confutata
Hating Autism Response
driving mad men crazy
Forum:
Raising Autism
Facts:
Canadian Autism Intervention Research Network
Autism Science Foundation
Science Rocks
Facts with Flair:
StopJenny
RespectfulInsolence
Blogs:
Countering Age Of Autism (Here you can follow rebuttals that AoA censored, and post your own)
Autism Herd
Autism Nostrum
A view from the boundaries
Surviving Motherhood
A touch of Alyricism
Gonzo
Confutata
Hating Autism Response
driving mad men crazy
Saturday
To all the 'my life is a tragedy cuz my child has autism' bloggers:
It is completely natural and human to vent. I've yet to meet someone that does not need, upon occasion, to say negative things. So why do I strongly disagree with parents of autistics blogging such negative posts about their parenting experience?
Time and a Place
There is a time and a place for all things. A public online blog is not the time, nor the place. Not to say that one should never make a negative comment online, or share the heartbreak and reach out to others-but in my opinion it is uncouth to post a purely negative exaggerated and dramatic look that is so completely one sided.
Venting online, where you are posting a one sided angry bitter rant about parenting your child is irresponsible and misleading. Parents who have just discovered their child has autism are searching the internet for answers.
This is what you want them to see? Blog after blog of 'my life is over, my child is dead, better if he/she had cancer!'? Where is the realism? Where is the honesty? As a parent yourself is this what you feel is supportive?
What about the public awareness aspect? As a parent we have the moral obligation to advocate for our children (be they autistic or not). How can you feel good blogging such an out of proportion look at parenting an autistic, knowing that you are spreading that poison-creating a stereotype that is incorrect, damaging and painful to the autistic persons in our societies?
The real tragedy is that people are so bombarded with these 'woe is me' anecdotes, blogs, articles, books, tv shows etc, that it has become to be believed as truth. Not just a truth, but THE TRUTH. People are buying into the big lie that autistics are less, that they are shadows, emotionless, unable to empathise, unable to learn, develop, nurture or in any way find happiness. And a Lie it certainly is.
Autism does not equal violence. It does not equal worthless. It is not worse than cancer nor is it equal to the halocaust. Being autistic does not mean a lack of emotion, empathy, or happiness. Raising an autistic is not a tragedy. It is parenting.
The Morals of Parenting
Regardless of what challenges your child faces, regardless of their disabilities or lack of such, diagnosis or lack of such, personality, shape, size, colour, etc-regardless there are some things that parents with morals do and do not do.
Moral parents do not abuse their children. Children, all children, depend on adults to protect them, support them and help them survive. Knowing this, moral parents do not abuse this dependance.
(Physical: inflicting physical harm on a child's body) Moral parents do not shake, choke, bite, kick, burn, shock, restrain, handle roughly or strike a child.
(Emotional: any act that can harm a child's sense of worth.) Moral parents do not isolate their child, intimidate, terrorize, threaten, shout, exploit and make unreasonable demands. They do not reject or humiliate their child.
(neglect: not giving the child what they need to develop) Moral parents do not neglect their child. Neglect is when a parent:
-does not make the child feel loved, wanted, safe and worthy
-does not take the child to a doctor or take personal care of themselves
-does not intervene when the child is at risk of harm
-does deny the child food, clothing, shelter when the parent is able finanically to provide such
-does deny their child an education
-does leave the child alone at home too often.
How is this attitude of 'my child is a tragedy' not abusive?
Will your child ever find out you said such things?
Of course they will. You make it public, they will find out. Perhaps they will read it themselves, be told by a family member-it matters not. They will learn that those words you 'vented' on your blog represents how you feel about them. Your friends, co-workers, NT children, family, neighbours will also hear about it. They will hear on the news, on TV and the radio, they will read about it online. How will you feel then, when your angry and bitter words are not just some online vent, but in front of all your aquaintances for judgement?
If you are very lucky, they won't find those very words. But they will find someone elses toxic post. They will wonder if you felt that way.
Pathetic is what it is, for a parent to be so focused on their own bitterness that they disregard the damage their words may cause. Spewing of such poison is abusive.
Moral parents love their child, unconditionally. They teach their child to cope with the world the way it is, while advocating on their child's behalf in hopes that the world will be a better place.
Moral parents learn about their child, their child's interests and strengths so that they can provide an envioronment that will maximize their child's potential.
Moral parents encourage their child to challenge his/herself so that they will strengthen their weaknesses.
Moral parents do not give up. They do not insist their child follows a certain path-but rather guide their child to make moral decisions, guide their child to learn and grow. Guide, not insist and force.
Parenting-the good and the bad
Reading all those angry blogs I started to think about what I personally have done differently with my youngest (who is autistic).
I changed diapers for a lot longer than I did for the older two and cleaned up more urine messes.
Is that tragic?
I sewed more for my youngest as the seams on cuffs of shirts and jackets drive him wild.
Is that tragic?
I had to pay more attention, to learn his body language and to read his facial expressions. (he did not talk till just before he started school).
Is that tragic?
I had to learn, in depth about the following subjects:
Trains, steam engines, bridges, rabbits, pokeman, yughio, electricity, generators, life cycle of plants, bees, lego, magnets, cartoon drawing, castles and medieval times, psychology in general, medical terms, cognition, autism, pragmatics, dsylexia, sign language, french, bug catching and keeping and all the facts of each bug discovered, environmental sciences, robotics, how to raise crickets, the specific details of reproduction, the specific details of the circulatory system and digestive system..... this list goes on.
Is learning tragic?
I had to be more aware of my language and what phrases triggered irritation from my child.
Is that tragic?
I have had more doctor appointments, therapists etc.
is that tragic?
The things I had already experienced from parenting my other children that are often touted as being an experience that only parents of autistics could understand:
-Cleaning up poo art. My oldest loved to decorate his crib. So I already had this covered.
-Fussy eating? HA! all my children are picky eaters, with not two of them following the same set of food dislikes and likes.
-Tempertantrums Yes, my youngest had more of them, but my oldest also threw fits. Lots of experience with this, plus I myself threw major temper tantrums as a child.
-running away and into danger. My oldest was on a halter till he was 5-he never would look where he went and would dart off at any time. My middle child also had to be watched. She closed her eyes when she ran. (try that for scary as hell for a mom). My youngest-well he and his sister are a year apart, so she tattled if he wandered. He also wore a halter.
-strangers making judgemenatl comments and looks. Hell yes, my oldest learned chinese when he was two and barely speaking english. He is so blonde his hair looked white. He was also very loud. And, what parent has not had someone be judgemental? long day running around, kids are fussing in line-pfft, happens with all kids. So my youngest does more obvious things. I simply don't care. I don't tend to explain either. (I do to my children, but not to the rude adult behind me that suggests they need punishment.
-conformity problems. Ummm, nope! All three of my children have issues conforming. None of my children were raised to follow blindly. All three have leadership qualities.
-Fighting the school system. I may have mentioned a few times that I have three children? I have been fighting the school system and it's insistance on conformity since my oldest hit grade three. Fighting at this level is new- now I fight for resources, accomodation, training for his teachers, social groups etc. With my oldest it was fighting for his right to use the bathroom when he needed (he still can't go 2 hours without a pee break), fighting for solid policies on bullying and violence (he would defend whoever was being bullied). With my daughter it was fighting for bullying programs and awareness (when she was being the bully, btw), fighting for resources to teach her more postiive leadership skills in a peer setting, advocating for more extra curricular programs that were not sports. (I live in hockey land), and fighting the school board on a resource that was innapropriate (a book premoting rascism and fear).
-health issues. My oldest is allergic to citrus. My middle child has seriasus? whatever is called when you ahve that flakey scalp. As a newborn she was colicky, her diaper rash was so bad we used cortozone cream. She needs glasses, and braces and can't eat beef or pork (makes her feel ill) My youngest has sinus issues, abnormal bowel movements, glasses and slurrs. So what? I have asthma, allergies, migraines and damage in my shoulder. Part of life.
So yes, I do have a problem with the crying and wailling and bitterness. As a parent you just have to suck it up, fight for resources, information and advocate for your children.
That's called responsibility.
That's called nurturing.
In my book, it's also called rewarding.
Hugs and Laughter
Time and a Place
There is a time and a place for all things. A public online blog is not the time, nor the place. Not to say that one should never make a negative comment online, or share the heartbreak and reach out to others-but in my opinion it is uncouth to post a purely negative exaggerated and dramatic look that is so completely one sided.
Venting online, where you are posting a one sided angry bitter rant about parenting your child is irresponsible and misleading. Parents who have just discovered their child has autism are searching the internet for answers.
This is what you want them to see? Blog after blog of 'my life is over, my child is dead, better if he/she had cancer!'? Where is the realism? Where is the honesty? As a parent yourself is this what you feel is supportive?
What about the public awareness aspect? As a parent we have the moral obligation to advocate for our children (be they autistic or not). How can you feel good blogging such an out of proportion look at parenting an autistic, knowing that you are spreading that poison-creating a stereotype that is incorrect, damaging and painful to the autistic persons in our societies?
The real tragedy is that people are so bombarded with these 'woe is me' anecdotes, blogs, articles, books, tv shows etc, that it has become to be believed as truth. Not just a truth, but THE TRUTH. People are buying into the big lie that autistics are less, that they are shadows, emotionless, unable to empathise, unable to learn, develop, nurture or in any way find happiness. And a Lie it certainly is.
Autism does not equal violence. It does not equal worthless. It is not worse than cancer nor is it equal to the halocaust. Being autistic does not mean a lack of emotion, empathy, or happiness. Raising an autistic is not a tragedy. It is parenting.
The Morals of Parenting
Regardless of what challenges your child faces, regardless of their disabilities or lack of such, diagnosis or lack of such, personality, shape, size, colour, etc-regardless there are some things that parents with morals do and do not do.
Moral parents do not abuse their children. Children, all children, depend on adults to protect them, support them and help them survive. Knowing this, moral parents do not abuse this dependance.
(Physical: inflicting physical harm on a child's body) Moral parents do not shake, choke, bite, kick, burn, shock, restrain, handle roughly or strike a child.
(Emotional: any act that can harm a child's sense of worth.) Moral parents do not isolate their child, intimidate, terrorize, threaten, shout, exploit and make unreasonable demands. They do not reject or humiliate their child.
(neglect: not giving the child what they need to develop) Moral parents do not neglect their child. Neglect is when a parent:
-does not make the child feel loved, wanted, safe and worthy
-does not take the child to a doctor or take personal care of themselves
-does not intervene when the child is at risk of harm
-does deny the child food, clothing, shelter when the parent is able finanically to provide such
-does deny their child an education
-does leave the child alone at home too often.
How is this attitude of 'my child is a tragedy' not abusive?
Will your child ever find out you said such things?
Of course they will. You make it public, they will find out. Perhaps they will read it themselves, be told by a family member-it matters not. They will learn that those words you 'vented' on your blog represents how you feel about them. Your friends, co-workers, NT children, family, neighbours will also hear about it. They will hear on the news, on TV and the radio, they will read about it online. How will you feel then, when your angry and bitter words are not just some online vent, but in front of all your aquaintances for judgement?
If you are very lucky, they won't find those very words. But they will find someone elses toxic post. They will wonder if you felt that way.
Pathetic is what it is, for a parent to be so focused on their own bitterness that they disregard the damage their words may cause. Spewing of such poison is abusive.
Moral parents love their child, unconditionally. They teach their child to cope with the world the way it is, while advocating on their child's behalf in hopes that the world will be a better place.
Moral parents learn about their child, their child's interests and strengths so that they can provide an envioronment that will maximize their child's potential.
Moral parents encourage their child to challenge his/herself so that they will strengthen their weaknesses.
Moral parents do not give up. They do not insist their child follows a certain path-but rather guide their child to make moral decisions, guide their child to learn and grow. Guide, not insist and force.
Parenting-the good and the bad
Reading all those angry blogs I started to think about what I personally have done differently with my youngest (who is autistic).
I changed diapers for a lot longer than I did for the older two and cleaned up more urine messes.
Is that tragic?
I sewed more for my youngest as the seams on cuffs of shirts and jackets drive him wild.
Is that tragic?
I had to pay more attention, to learn his body language and to read his facial expressions. (he did not talk till just before he started school).
Is that tragic?
I had to learn, in depth about the following subjects:
Trains, steam engines, bridges, rabbits, pokeman, yughio, electricity, generators, life cycle of plants, bees, lego, magnets, cartoon drawing, castles and medieval times, psychology in general, medical terms, cognition, autism, pragmatics, dsylexia, sign language, french, bug catching and keeping and all the facts of each bug discovered, environmental sciences, robotics, how to raise crickets, the specific details of reproduction, the specific details of the circulatory system and digestive system..... this list goes on.
Is learning tragic?
I had to be more aware of my language and what phrases triggered irritation from my child.
Is that tragic?
I have had more doctor appointments, therapists etc.
is that tragic?
The things I had already experienced from parenting my other children that are often touted as being an experience that only parents of autistics could understand:
-Cleaning up poo art. My oldest loved to decorate his crib. So I already had this covered.
-Fussy eating? HA! all my children are picky eaters, with not two of them following the same set of food dislikes and likes.
-Tempertantrums Yes, my youngest had more of them, but my oldest also threw fits. Lots of experience with this, plus I myself threw major temper tantrums as a child.
-running away and into danger. My oldest was on a halter till he was 5-he never would look where he went and would dart off at any time. My middle child also had to be watched. She closed her eyes when she ran. (try that for scary as hell for a mom). My youngest-well he and his sister are a year apart, so she tattled if he wandered. He also wore a halter.
-strangers making judgemenatl comments and looks. Hell yes, my oldest learned chinese when he was two and barely speaking english. He is so blonde his hair looked white. He was also very loud. And, what parent has not had someone be judgemental? long day running around, kids are fussing in line-pfft, happens with all kids. So my youngest does more obvious things. I simply don't care. I don't tend to explain either. (I do to my children, but not to the rude adult behind me that suggests they need punishment.
-conformity problems. Ummm, nope! All three of my children have issues conforming. None of my children were raised to follow blindly. All three have leadership qualities.
-Fighting the school system. I may have mentioned a few times that I have three children? I have been fighting the school system and it's insistance on conformity since my oldest hit grade three. Fighting at this level is new- now I fight for resources, accomodation, training for his teachers, social groups etc. With my oldest it was fighting for his right to use the bathroom when he needed (he still can't go 2 hours without a pee break), fighting for solid policies on bullying and violence (he would defend whoever was being bullied). With my daughter it was fighting for bullying programs and awareness (when she was being the bully, btw), fighting for resources to teach her more postiive leadership skills in a peer setting, advocating for more extra curricular programs that were not sports. (I live in hockey land), and fighting the school board on a resource that was innapropriate (a book premoting rascism and fear).
-health issues. My oldest is allergic to citrus. My middle child has seriasus? whatever is called when you ahve that flakey scalp. As a newborn she was colicky, her diaper rash was so bad we used cortozone cream. She needs glasses, and braces and can't eat beef or pork (makes her feel ill) My youngest has sinus issues, abnormal bowel movements, glasses and slurrs. So what? I have asthma, allergies, migraines and damage in my shoulder. Part of life.
So yes, I do have a problem with the crying and wailling and bitterness. As a parent you just have to suck it up, fight for resources, information and advocate for your children.
That's called responsibility.
That's called nurturing.
In my book, it's also called rewarding.
Hugs and Laughter
Monday
Guess I hit a nerve
It would seem, that to parents like Julie, offering hugs and laughter has in some way triggered a landslide of attacks.
That's ok Age of Bullshit, you have shown your colours.
Again.
Some interesting places to go to see how others see that recent bullshit post of Julie at AoA
Michele at http://www.adayinthelifemij.com/2009/07/get-over-yourself-parent-autism-is-not.html
Autism Nostrum at: http://autismnostrum.blogspot.com/2009/07/queen-for-day.html
Alexander at: http://aspieperspective.blogspot.com/2009/07/of-mothers-and-mothers.html
Louise at: http://evendumbasseshavefeelings.blogspot.com/2009/07/thelma-may-have-lost-her-glasses-but.html
Thelma at: http://evendumbasseshavefeelings.blogspot.com/2009/07/age-of-fools-wont-play-with-thelma.html ; http://evendumbasseshavefeelings.blogspot.com/2009/07/what-devil-is-ages-problem-lotta-fools.html
Kwombles http://counteringageofautism.blogspot.com/2009/07/why-not-let-it-on-when-im-going-to-put.html ; http://counteringageofautism.blogspot.com/2009/07/questions-and-ponderings-over-mercury.html
Gonzo's: http://gonzogalore.blogspot.com/
Jeanette's: http://survivingmotherhood-mom26children.blogspot.com/
Kathleen's: http://autismherd.blogspot.com/
That's ok Age of Bullshit, you have shown your colours.
Again.
Some interesting places to go to see how others see that recent bullshit post of Julie at AoA
Michele at http://www.adayinthelifemi
Autism Nostrum at: http://autismnostrum.blogs
Alexander at: http://aspieperspective.bl
Louise at: http://evendumbasseshavefe
Thelma at: http://evendumbasseshavefe
Kwombles http://counteringageofauti
Gonzo's: http://gonzogalore.blogspo
Jeanette's: http://survivingmotherhood
Kathleen's: http://autismherd.blogspot
Sunday
Julie's buddies attack with all the rage they can muster:
As to my angry commenter: Consider it corrected. I would like to point out, however, that the comments were left for julie. My most sincere apologies to all my readers for any inconvenience my mistake made. Too bad certain other people are unable to admit they make mistakes.
I did try posting polite responses, but they are being moderated. So I will continue here.
Hugs and laughter
And again:
TERESSA writes:
Angela-Lovethosekids
Your website-
http://autismvaccinefacts.webs.com/apps/links/
says it all. "Hugs and laughter" WILL NOT help my daughter talk from her vaccine injuries nor help Eve learn abstract thinking.
Your comment-
"It breaks my heart that you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments."
What a bunch of bullshit you posted. Here is your real motivation, not for Julie, Eve, or my daughter. Go off and spout your fake "caring" elsewhere:
some highlights from your website-
I have a few blogs.
http://notragedyhere.blogspot.com/
http://blogs.myspace.com/index.cfm?fuseaction=blog.ListAll&friendId=478998425
I am also on twitter as safemindsquack
Index The stop jenny website
www.stopjenny.com/index.html
rebuttal to jenny's website
Posted at 4:22pm on Sat, Jun 20 2009
Colebeck Death by lethal vaccine
www.ratbags.com/rsoles/vaxliars/colebeck.htm
The letter circulating about the girl that died from vaccination and the rebuttal to her fear mongering.
Posted at 3:05pm on Sat, Jun 20 2009
Herd_immunity What is Herd Immunity
en.wikipedia.org/wiki/Herd_immunity
the wiki page on herd immunity
Posted at 2:59pm on Sat, Jun 20 2009
23519029 Vaccine Settlement no Landmark
www.msnbc.msn.com/id/23519029/
My response (side note-my comments are not allowed on but she continues to reply on her blog to my comments.)
Thank you for posting all my links that was very kind of you. (and yes I realize you won't allow this post on your comments)
You do realize that if I had a hidden agenda I could have easily posted under a different name. All my blurbs contain disclosure statements.
As i had posted in response to Twyla's angry post to me, I did not bring up any of my beliefs as to treatment, causes etc. I merely responded to the pain and despair in the post.
You can choose to make it about my stance on autism and vaccines if you wish, I truly care not. Attack my blogs, heck you can come see me on fb and huff and twitter and myspace and sling all the mud you would like.
Your bitter and accusatory words change nothing, although they certainly do demonstrate quite clearly your merrit.
And yes, TERESSA, hugs and laughter do matter. I am sorry for you that you can not understand that.
Chris's response to the post of mine that was disallowed and my rebuttal:
And perhaps someone can explain how you are able to respond to my words, albeit a wee bit of twisting, when my response never appeared on Julie's page?
"Oh, and for Angela, I just went and looked at your blog, BTW. This is going to be long, so please forgive me.
You wonder why we are so angry. Why we slap your hands away when you "reach out" to us.
You pretty much call us liars, that's why. You say that our children's problems are not real. Their digestive issues are a figment of our imaginations."
But Chris, I was slapped before you had any idea as to my stance on autism and vaccines. For the record in no place have I posted that parents are imagining digestive problems. I don't say that parents are 'liars' although i have and will continue to point out when they do lie.
Chris continues: "I am actually not going to touch the whole vaccine argument. My own child's case is much more complicated than that so I am not even going to go into the "cause" arguments with you."
I never expected you to get into this argument. As i so stated in response to Twyla.
Chris writes:
"Yes, doctors talk like that about digestive issues when it comes to children with autism. They do it all the time."
My doctor did not talk to me like that. Therefore your implication is untrue. I am sorry that you ran into doctors that did not respond appropriately to concerns you had for your child's health.
Chris goes on with: "For my daughter it was yeast infections ...(lots of detail I cut out about her child's health issues)...
Guess who prescribed her Nystatin for her yeast infection? That's right, one of those so-called quack DAN! doctors. Within ...(describing her daughters lack of symptoms)... REM sleep she so desperately needed."
First I did not say "No DAN doctor has ever helped any child". That being said, some of the 'treatments' being used by some DAN doctors are painful and have not demonstrated SCIENTIFICALLY to be sound. Some are actually quite dangerous.
Secondly. My child had ear infections, did not sleep, refused to potty train, had constant sinus infections, would pee in every available spot in his room, gave himself a rash on his privates from near constant fondling of his self, did not speak, did not crawl. He would wander off with strangers, throw fits that so resembled seizures that i rushed him to the hospital and often would get a fever of 103+ with no symptoms. Without any doctor, with no biomeds no lupron, no hbot, no detox, no chelation no gfcf diet (except for antibiotics for the ear infection and saline spray for his poor sinuses) all these things corrected themselves in a short amount of time. The summer before he started school he potty trained, began to speak, stopped urinating all over, slept 6 hours in a row! no more ear infections (which are common in children under 3), no more fondling himself raw.
Chris goes on to say:
"Yet people like you chastise me for treating a very real problem she did indeed have. The camera does not lie; I have photographs before and after beginning biomed of my daughter and there is a very shocking difference in her appearance. You call people like me liars, tell us that we have Munchausen's by proxy brains, tell us that we just cannot handle it that our children are not perfect and we have no love for them so we torture them with biomed - and then you wonder why we slap your hand in anger. Could you befriend someone who ridicules you, trivializes your child's (and yes your family, when your child suffers, the whole family suffers) pain and calls you a liar? That is what you are doing."
I have chastised no parent until they start using lupron with a mock precocious puberty diagnosis. This I feel is child abuse. I never said her problems were not real, nor would I ever look down on a parent for trying to help his/her child with a medical issue-unless the treatment was dangerous or unnecessarily painful. As to your photos, I have photos too that show a remarkable improvement in my child's health. He went from pale with dark circles under his eyes, too skinny by far to being healthy and bright eyed. I had not called you or people like you liars for a reason. I don't feel that calling someone a liar is correct use of the meaning of 'liar'. For even someone who spouts fibs all day does occasionally tell the truth. I do however point out when what is being said is factually incorrect, or when I disagree. I have never told someone they have munchausen's by proxy brains, not too sure what that refers to. I clearly understand from your rambling on what you imagine my stance on biomed is that you only accept positive comments from 'people like you'. You quite clearly have divided the world into distinct groups. People who completely agree with you for refusing to accept your child as valuable the way she is, people who believe that vaccines instantaneously damaged their child, people who use any sort of non mainstream medicine be it safe and proven or not VS those who do not.
How sad for you.
Chris continues:
"I should also add that my daughter potty-trained after a few months on antifungals and good quality probiotics. She had no sense of needing to move her bowels before the probiotics. I was very pleasantly surprised. I was beginning to believe that she would be wearing a diaper into her teens. I am still pinching myself that she is completely toilet-trained when just one summer ago our carpets were covered in smeared poop."
I am glad for her that she potty trained. So is my child.
Most autistic children potty train, although not typically on par with the NT development. It's a developmental delay, not a developmental non existence.
Chris says:
"By the way, my daughter is FAR from recovered. She is on the more impaired end of the spectrum. She is six and has no speech. She has no pretend play at all and is spending the summer stimming at the kitchen and bathroom sinks because she is fascinated with water."
I never said your child was recovered. Julie is the one that posted her child is recovered. 'My daughter is here, yes, and I have so much to be thankful for, she is recovered!' . In your post you also say she was born in 2001 which makes her 8 not six. (bolded part does not apply as I mistook who had slapped me in the post) I am also learning from my son (who just turned 11) that imagination is there, it is just demonstrated in an atypical fashion. If stimming at the sink enjoying water makes her happy, where is the harm?
Chris continues: "The point is she feels better, and it is no thanks to "mainstream medicine". My anger has nothing to do with me not loving her; it has everything to do with her regular doctors ignoring her issues and treating her with no compassion."
I am glad she feels better. Your anger is somewhat directed at mainstream doctors yes, however Julie refers to her child as being dead, She did imply that the Evie who lives in her home is not her daughter ("rage I feel over the loss of my baby girl" "She is dead. That Eve is dead.."I want that Eve back! I want THAT Eve!"how our children are the sickest on the planet" "My daughter’s MIND, HEALTH and LIFE’S POTENTIAL were stolen") These comments clearly demonstrate her lack of acceptance for her child as she is. (note to julie: She may not be communicating fully Julie, but don't kid yourself. She may very well be hearing every word and understanding. She takes in a lot more information than you think.) Her attitude is that Evie has no value unless she can 'fix' her. that she is ill, dead, gone, sick, has not mind, no potential. I encourage you to go read what the adults who are autistic have to say about these concepts. The Eve Julie has still needs to feel love and accepted FOR WHO SHE IS, not only for who she wants her to be, what she expected her to be.
Chris writes:"You go on and on about how we dehumanize our children, how we don't see them as human beings and so we treat them for issues that don't exist. Honey, with that attitude, we will never be friends. It is the medical community who dehumanized and failed my child, not me, not her DAN! doctor, not the so-called "martyr moms" and "victims" here on AoA. I come here because for the first time I do not feel so alone. I know I am not insane. I know that my child's issues are/were real and so does everyone else here."
First I have not said you dehumanize your children, but I do in part agree with that statement. Calling your child 'dead' is most certainly not recognizing her as a living, thinking, feeling person. I have also never said that 'all those anti vax parents are treating their children for issues that don't exist' nor did I say that you, Twyla or Julie in particular are doing this. I have said that chelation therapy is dangerous and should only be used for what it is intended-to remove heavy metal poisoning. I have also stated that some quacks are providing testing that is not accurate (and provided references for such statements) in order to sell chelation to parents of autistics. I have also stated that Dr Geier's quackery of 'diagnosing' ASD children with precocious puberty then prescribing Lupron at dosage levels that EVEN the Pharmaceutical companies do not endorse is dangerous, malpractice and beyond absurd.
I also refute your statement that 'the medical community who dehumanized and failed'. A handful of doctors does not represent the entirety of the medical community. There are good doctors and bad.
I am all for treating medical issues properly. Re-occurring yeast infections should have been dealt with by the doctors you saw, I agree. Digestive issues are not a joke, I concur. I do not agree that ALL children have digestive issues, yeast infections etc. This simply is not factual. Many children who are diagnosed ASD also end up with other diagnosis. From epilepsy to anemia. These are separate issues and should be treated as such.
As for your AoA crowd, Some of the posts have provided wonderful insights and resources. The level of bitterness, rage, self pity, lack of tolerance for those who are autistic, lack of scientific credibility does indeed seem to suit you. Glad you found a niche. (Yes that is an attack)
As for offering you friendship, I did not ever think we would go for coffee, share confidences and all those wonderful things friends due. As I have stated I was merely reacting to the pain and anger in Julies post and reaching out. Why? Because it is the right thing to do. (my opinion). It's called compassion. I have been there. Most people have, at some point in their life, been consumed by anger and despair. Again, wonderful that my pointing out the positives elicited such a violent outpouring of hatred.
Chris continues with "And honestly, yes, I WOULD love to see her recovered from autism someday. Will it happen? Likely not. But someone has to take care of her when I am dead. She has four siblings who I pray will always be there for her but there are no guarantees. A cure for autism would free her up to live a life on her terms and not be at the mercy of others who may or may not be kind to her."
Julie said in her article she was recovered. (yes now I am laughing at you).(edit: For that bolded comment I do apologize. Even if it had been Julies post it wasn't neccessary to drop to chris and twyla's level of ignorance.) The very statement that you want to 'recover' her rather than you want to help her learn and grow is devaluing and a rejection of who she is. As for your declaration that someone has to take care of her... It is true that some persons who are autistic will require some level of care permanently. However, she is eight. She has barely begun her journey in life. Regardless of how slow her development seems to you, you who demands that she be on par with the typical child, she will develop and grow. She will learn. In her own way on her own schedule.
As for being at the mercy of others who may or may not be kind. Where did you get the idea that having autism is the equivalent to being at anyone's mercy? All children are at the mercy of their parents and the adults who interact with them. All children, ASD or not will have to deal with bullies, teasing and what not. Unless of course one lives in a bubble. Just like any other parent it is your job to help her have a strong sense of self so that she is able to deal with the ignorance out there. How you will manage that when you personally don't feel she deserves esteem? (Unless of course she transforms into what you perceive a 'normal' child should be.)
Chris continues:
"Wanting a cure does not mean I do not love her. I am actually shocked that there are those who feel that way and did not know there was anyone who thought like that until I found ND and all their sites."
Perhaps our definitions of what loving a child as a parent differs. To me, loving a child is accepting them as they are while still encouraging them to learn, challenging them to be more. To me, loving a child is not synonymous with feeling they are dead, or that their very personality requires curing. To me loving a child is seeing the beauty of their innocence and striving to protect that child while still allowing them to make mistakes, experience life so that they may learn. It is learning to meet that child's needs not forcing them to meet mine. To me loving a child is joy, happiness and laughter along with worry frustration and fear. To me loving a child is encouraging them to explore the world, celebrating their accomplishments and helping them to utilize their strengths to compensate for their weaknesses. To imply she needs curing, rather than providing her with understanding is a rejection of who she is.
Hugs and laughter (you obviously are in need of some)
Angela
And just for the record Julie does say she is the mother of a recovered child:
http://www.ageofautism.com/2008/09/an-autism-moms
http://www.whale.to/vaccine/november_19.html
Twyla responded to my post on AoA
this is the dialogue:
@Twyla: You said, "Julie is not just saying that her daughter is not going to be like she expected, but that her daughter is not who she would have been without the vaccine injury. Julie will never know who Eve would have, could have been without our f-d up out-of-control vaccine program. There is a difference."
Firstly, I quite deliberately did not tackle the science vs pseudo science aspect of Julie's post. I instead was reaching out to her, in hopes of reminding her that while raising a child with special needs does indeed include worry, anger, fear in ways that parents of NT children do not fully understand it can also be rewarding, joyful and beautiful. If you would like to get into a discussion on autism as 'vaccine damage' we can do that. Be aware though, that I have read the AoA version of the studies, read studies on pubmed, researched the founders of AoA, Safeminds and Generation Rescue. I am happy to invite you to a logic based debate. Julie's post, however was not about science, it was about feeling angry and bitter over her child's autism.
Twyla you say "Lovethosekids, you are looking at Julie's post in a biased way."
Of course I responded to an emotional post with my own bias. This is the nature of being a human. She also posted with her own bias. As you are now.
Twyla you say "How can you say, (in regard to my comment of 'you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments?') That is not what comes through at all. Clealy Julie loves and enjoys her child and is proud of what she can do. But baby books are meant for the "neuotypical" with spaces to show when typical milestones were met, etc. There is an incongruity between our babies'/toddlers' lives and that depicted in the typical baby book.
Please explain where in Julie's post it is clear that she loves and enjoys her child, and is proud of what her child can do?
As for a baby book, I still happily write in mine. The fact that my son's first words were at age 4 are still a fond memory.
I have never seen a baby book that shows when typical milestones are met, although I am sure there are some. Get one that doesnt if it disturbs you. For your information my oldest child walked at 9 months, but couldn't ride his bike till he was 10, and he is NT. Not all children develop the same, or on any schedule. More so with a child with a developmental disorder, but milestones are still present and I would think they deserve to be celebrated.
Twyla you say (in response to my comment of "But it is important too, in my humble opinion, to not stay immersed in anger and bitterness.") "Duh. Julie says that too. She is writing about grappling with lots of emotions. Sometimes we have to express it all in order to then move on and live our lives to the fullest."
I did say I was assuming her post was a onesided rant. I also acknowledged the need most people have to vent.
Twyla you say "As far as cancer, of course it would be unbearable to watch your child go through cancer treatment, and worse yet to watch your child die of cancer - absolutely unbearable. But I think what Julie is pointing out is that if your child is diagnosed with a medical condition such as cancer, there are existing protocals and specialists, whole sections of hospitals, support systems in place. Whereas for the medical issues affecting kids with autism there is so little support from mainstream medicine, so little knowledge of effective treatments, and not even much research on treatments for the kinds of issues Eve faces."
There are existing protocols and procedures for autism as well. There are behaviour therapists and interventionists, social scripting, speech therapy and a variety of other professionals who are trained in assisting an autistic child in gaining skills, trained in teaching parents on how to accommodate and parent an autistic child. Our family doctor referred us to the pediatrician and child psychologist-which meant our medical did in fact cover it. They in turn, upon assessing our child reffered us to the appropriate professionals. Again Covered. Of course, this assumes you have extended medical services. (in both our scenario with autistic children and in the scenario of having a child with cancer.) If you refer to unscientific 'treatments' then of course it is not covered. Many of the treatments parents are clamouring for have actually been proven to be dangerous and not effective.
Twyla you say "In many circles there is not even curiosity to try to better understand these issues; parents are told things like, "Oh, it's part of the autism. It's genetic. Nothing you can do." or "It's part of the autism. It's psychological. He's constipated because he is withholding poop in an effort to control his world."
In the circles I am exposed to no one speaks like this. My sympathy to you if your circles do. There are always things you can do to help your child, it is most certainly at least in part genetic and shame on anyone who is not curious at the very least as to the things that effect their child's well being.
Twyla you say "In conclusion, your comment is very judgemental and you don't fully understand Julie's article."
Well Twyla, I am sorry that you felt I was being judgemental. What I felt reading her post was concern.
Sincerely
Angela
Saturday
To Julie Obradovic about "Autism Perception: 'A Bump in the Road?"
Dear Julie,
I just read your post on AoA here
My heart goes out to you and your family. Being a mommy is not the easiest task, I know. When, as a parent we are faced with the reality that our precious child is not the same as other people, we have the right to feel angry and bitter, to grieve and mourn. We had expectations for our child, for our relationship with that child. It is very normal and natural to go through a mourning stage when we discover that these expectations will not match reality.
But Julie, as a mom, we have to let go of that selfish anger and bitterness. We have to bury those expectations and open our hearts to new dreams and goals. We have to let go of the grief. We simply must get past that very selfish grieving stage, Julie, because as Mom's we have a very important job-to love our child unconditionally.
I am not saying it is easy Julie. You will have to find your way to your child. She may not react the way you expect her to, but she does in fact have reactions. She may not communicate how or when you would expect her to, but she will in fact communicate. It will be your job, Julie to learn to understand this beautiful child you have been gifted with. Don't mistake me Julie, I know this is not the child you thought you were getting, but I promise you that if you learn to love this child BECAUSE of her differences, unconditionally accept her the way she is, let her teach YOU how to communicate with her, relate to her, interact with-you will be astonished by how much she will add to your life.
Your pain does not serve you or your loved ones well, Julie. Your resentment that you did not get the child you expected, that resentment will spill over teaching your other children to resent as well. Your daughter may not demonstrate her intelligence in the ways you would expect, but she is taking in information Julie. How must it feel to her? Your disappointment and rejection of her, your frustration anger and selfish bitterness?
Please Julie, do not misunderstand. Every parent goes through feeling helpless, sorry for themselves, angry and bitter. More so a parent that finds out their child is not typical (why me! it's not fair!) and yet more so a parent that looses a child. But living there, in that pit of pain and hurt and anger-harms you, harms your family and damages everyone you come in contact with.
Julie, please, put aside all your preconceived notions of what your child should do, how your child should be and love her with all you are. Learn to listen to her, learn to LEARN from her.
Feel pride in her accomplishments, accept that some of her behaviours are necessary-for her. Look at your child without the bitterness changing your view. Note how beautiful she is. Let yourself accept her, just as she is.
And the journey will begin, taking you places that will fill you with fierce joy, pride and love.
Sincerely,
Angela
Sunday
New links!
A positive forum concerning autism, promoting science, resources and lively discussions. Anti-Woo
Website promoting science over woo, understanding over fear mongering, a positive out look at raising an autistic child rather than victimizing and blaming
Saturday
Schools out! The June Circus
This time of year is always a rough one for me. There is so much going on that I spend my time on auto pilot, often feeling completely overwhelmed with all my to do lists.
Both the 'babies' have their birthday parties for friends. I always worry over this. (Will anyone show up for my son? He does not have many friends, well only one actually, but he thinks everyone is his BEST friend.) His party was simple. Pay the pool. Show up with cake and drinks. Our local pool does everything else. They supply the plates, cups, balloons, decorations and they supervise the kids in the pool). Five kids showed up, and he had a wonderful time. I had baked cupcakes (in 80+ weather, sigh), decorated with cookie crumb mud and gummy worms. While they swam and yelled I hid in the party room with a book and a coffee, grateful for the break.
The only remarkable moment was when they were playing with one of his gifts (a very cool magnetics set with zillions of those metal marbles) and one of the boys knocked the pile of marbles so they flew across the floor in a dozen directions.
My son yells "OH! OH! MY BALLSS!!! CATCH MY BALLS!! GET THEM!!!" As he hopped and did his 'excited dance'.
Well, the group is all at that wonderful giggle stage of 11. They all stopped and snickered 'balls, hehehehehe'.
Now, Little Man has been trying to figure out that secret code of social interactions. To my surprise he NOTICED that they were all being 'strange'. He turns to look at one buddy and says "What? Why is that funny? You bumped the table and knocked them everywhere!" (He has his puzzled look on-a look that is easily misconstrued for angry.)
(Snciker, Giggle) "Sorry Little Man." the boy in question gasps. "What did I knock everywhere?" Grinning mischieviously.
"All of my balls!" Little Man repeats, to the delight of the little monsters, who all shriek hysterically with laughter. (That commercial is playing in my head, the one where the mom is feeding kids hotdogs and asks them if they want 'bread or buns' and they all giggle and snicker over the word 'buns'.)
Little Man looks at them all. He waits for them to calm down. "Why is it funny?" He asks again. They all start giggling again.
Now, I can see that my boy is getting cranky over this whole deal. I turn to one of the other boys and say "How about if I go use the washroom, and you explain to him why that word was funny?" His eyes go wide. "Seriously. Or do you want me to?" I asked. Poor kid turns purple and says "NO! uh, I will!!"
No clue what was said, but my boy was content with the exchange. 
The other party...My now 12 (sigh) daughter is very social but as a preteen she decided to have a 'cool' party. This of course meant that she had all sorts of plans that I had to fulfil. 
Her theme was 'So you think you're a teen?' I'm an avid photographer (not a pro) and she decided I should set up an area for 'glamour photos'. She also decided they would have dance contests, singing contests, wit battles etc.
In case this was not enough of a challenge, she also booked this for the last day of school. Which meant I had to bake at 6 am, to be able to run to town quick after dropping the kidlets off to school (forgot ink for the printer) and race back to the school for year end awards. School was dismissed at 1130, party was at noon. (sigh)
My husband escaped with Little Man (they both enjoyed the one on one time) and I considered escaping too, but before I got my shoes on the gaggle of preteen girls arrived.
In spite of myself I had a great time. They all hammed it up nicely for photos. I printed off each child a 'contact sheet' such as you get for your portfolio, and a selection of the best and silliest pics. The young ladies entered each contest with a decided lack of modesty and a great deal of enthusiasm.
I was enthralled with this group of girls (only 6 girls, felt like 20, lol). They are all incredibly different-both in looks and temperment. Yet they are a tight knit group. Fascinating, truly.
As for the awards, both kids are on the honour roll so I of course am as pleased as punch.
Delillah is excited for summer break, but Little Man is feeling lost. His routine is gone which always distresses him. Hopefully I can provide enough structure to keep him level. He is also distressed as his teacher next year is not the teacher his sister had this year. This is the first time in his experience where he does not 'inherit' his sisters teacher (they are a year apart).
At his IEP we decided to allow more typing and scribe help, which means I have to work on his hand writing myself. It is hard to decide what help is priority with Little Man. His reading is grade lvl this year (dyslexic) but his spelling and hand writing is grade 2 lvl. He cannot prove his intelligence if he has to write his answers. It takes him about 5 minutes to write a complete sentence. So.. Scribe it is. Thankfully, he is going into grade 6, which in our school means the students receive laptops to use for school work. We are going to work on typing skills over the summer. It will be his last year at our wonderful school, as our district is changing its grade splits. We are to have 'middle school' after this next year, which will be grade 7-10. Unfortunately middle school is actually in the same building as our high school. I am unsure if this will be a good move for Little Man and have considered moving him to our private school. The private school is church based, smaller (which would be great for one on one help) yet does not have access to some of the extra goodies one finds in public school. (no sport teams, no exposure to woodworking etc). I meet with the principals of both schools in september of this year, so I guess we will see.
Monday
Age of Autism part two
Listing prominent spokespersons and writers for this organization and their 'credentials'. I am going to go through them as I hear of them, or read their work. What I am seeking is credentials. Being a parent of an autistic or even an autistic person does not count. Are any of these persons Scientists? Doctors? Trained in the field they are talking about?
You can make your own decisions from there 
The Editors:
Dan Olmstead:
As per Wiki Dan Olmsted is an investigative reporter. Olmsted wrote The Age of Autism report series about the controversy surrounding the possibility of a link between autism and vaccine injuries. His columns on health and medicine appeared regularly in the Washington Times and were syndicated nationally from UPI's Washington D.C. bureau. He currently edits the Age of Autism website, billed as the "Daily Web Newspaper of the Autism Epidemic".
Criticism
Scientific studies have confirmed that there is no link between thimerosal and autism.[5]
In a critical assessment by the Columbia Journalism Review of the thimerosal controversy, Olmsted's reporting on unvaccinated populations has been characterized as "misguided" by two anonymous reporters. Both sources "believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions".[6]
A 2006 study demonstrated a genetically determined syndrome with symptoms often associated with autism specturm disorders, including "cortical dysplasia, focal epilepsy, relative macrocephaly, and diminished deep-tendon reflexes". Intractable focal seizures began in early childhood in several children of the Old Order Amish studied.[7] Olmsted was criticized for missing this population of autistic Amish children.[8]
Another link to check out for Dan HERE
KIm Stagliano
Well, I searches and searched. I found blogs she has written, lots of AoA stuff she is linked to, twitter and so forth. Strangely enough there are no listings for her credentials. (unless being a parent makes one an expert. If anyone has more information on this 'managing Editorf' of Age of Autism, please post it.
Mark Blaxill: Editor at large of AoA Again, no credentials that in any way make him an expert on autism or vaccines, or quackscience. I did find many sights with his blogs, interviews, propaganda.
as per THIS site
Mark Blaxill (Vice President and Director, Safe Minds)
Mark Blaxill is the father of a daughter diagnosed with autism and Vice President of SafeMinds. He spent most of his professional career at The Boston Consulting Group (BCG), where he was a Senior Vice President until he left the firm in 2006. While at BCG he was the leader of the firm’s Strategy Practice and led firm initiatives in the area of globalization, open source software, intellectual property and network analysis. He has had wide industry experience, including client assignments in information services, semiconductors, pharmaceuticals, consumer electronics, forest products, retailing and pulp and paper. He has worked on a wide range of business problems for CEOs and heads of strategy of Fortune 100 and Dow Jones index companies, including corporate portfolio strategy development, business unit strategy, strategic planning process development, research and development strategies and process reengineering. He is currently writing a book on the subject of intellectual property strategies for business and launching a new business venture. He is a named inventor on BCG’s first ever patent application.
He holds an MBA from Harvard Business School with distinction and a bachelor’s degree in international affairs from Princeton University where he graduated summa cum laude and Phi Beta Kappa. He is also the author of several publications on autism: including "What's going on? The question of time trends in autism" (Public Health Reports, 2004); "Reduced mercury levels in first baby haircuts of autistic children" (International Journal of Toxicology, 2003); and "Thimerosal and autism? a plausible hypothesis that should not be dismissed." (Medical Hypotheses, 2004). He has been a frequent speaker on autism related issues, including conference presentations for Neurotoxicology (August 2006), Defeat Autism Now! (May 2001, October 2006), Autism One (May 2004, 2005 and 2006), National Autism Association (November 2005), NIEHS (August 2005) and the Institute of Medicine Immunization Safety Review (July 2001). He is married to Elise and has two children, Sydney and Michaela. He lives in Cambridge Massachusetts.
The 'Writers'
Katie Wright:
Katie Wright is an American actress. As per WIKI
KP Stoller, MD
President, International Hyperbaric Medical Assoc
Medical Director, Hyperbaric Medical Center of New Mexico
Kind of interesting, but a search on this name pulled up only four pages of hits. Each of those hits seems to belong to well known quacksites, all of them about autism, mercury, biomendquack and so forth. I searched wiki, nothing. I searched newspapers (real ones, not online self acclaimed newspapers) nothing. Lots of anti vaccine sites. Again if anyone has more info on this 'dr' please post.
David Kirby\
David Kirby is a journalist based in Brooklyn, New York, and was formerly a regular contributor to the New York Times since 1998, he is author of the 2005 book Evidence of Harm - Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.
Full page HERE
Jake Crosby
Jake Crosby is a student with Asperger Syndrome at Brandeis University who plans to major in history, and a Contributing Editor of Age of Autism (As per Age of Autism)
To be continued.
Patterns?
Noticing patterns
My husband and I (I am happily remarried) were discussing things and we got on to the subject of patterns. Particularly patterns of Little Man's behaviour (my autistic child).
I have been keeping a journal about Little Man's eating habits, sleeping habits, behaviour displays, learning spurts etc, since he was two. So we went through the journal and made some graphs to see if we were onto something. (Funny, I know, but I am driven with a NEED to understand my child. When you have a child that is unable, or uninterested of sharing their feelings and thoughts it is difficult to know what exactly goes on in their sweet heads!).
Lo and behold a pattern emerged. Little Man goes into what we call 'hissy fit mode' after a long stretch of predictable behaviour and little growth. (allow me to go into a ramble about this statement. By predictable behaviour I am referring to his tendency to do the same things, at the same times. He will go months having the same behaviour problems, the same routines, the same interests. And by 'the same' I am being oh so literal. He will get up at the SAME exact time, eat the same exact breakfast at the same exact spot at the table. He will engage in the same scrap with his sister EVERY morning. 'little growth' refers to him not seeming to intake any new information or learn any new skills or even improve on existing skills during this time. Not academically, not socially, and even physically he seems to grow little.)
His hissy fits are always around some circular idea he can not seem to let go of. His sister will call him over to see something and he's flipping out. He will tell me over and over 'I'm not a dog for her to call!!' and he wont hear any discussion on it until he is doing flipping out. He paces his room in a circle, works up to crying and yelling. This can last from 15 minutes to 5 hours. We have tried talking, flicking lights, touching (his hand, or lifting his chin). We have tried consequences (loosing electronics, being grounded, extra chores). We have tried ignoring. So far, no results in ten years of trying to break through these fits. This will continue for days, weeks and once for 2 and 1/2 months with fits occurring with alarming frequency over asinine things from: If we have yogurt tubes or not; the weather; him deciding we are demanding he be 'perfect'; some comment he took literally; something he can't find, etc.
Then, after these fits, we see incredible growth. (For example in a two week period he went from reading at an early grade one lvl to reading at an early grade four lvl, learned to ride his bike without training wheels, tied his shoes for the first time, lied about something and grew a shoe size and a clothing size)
So we smilingly refer to this as 'batch processing'. It truly seems that Little Man stores information over long periods of time, and perhaps (this it only my theory) when he starts to actually process the information he is overwhelmed and thus we get the 'behaviour'.
Would love to hear thoughts back on this from other parents of high functioning autistic children.
Hugs and Laughter
Faith and Science, Myths and Facts
Faith and Science, Myths and Facts
Let's start with some definitions of certain words and phrases:
Faith: n.
1. Confident belief in the truth, value, or trustworthiness of a person, idea, or thing.
2. Belief that does not rest on logical proof or material evidence. See Synonyms at belief, trust.
3. Loyalty to a person or thing; allegiance: keeping faith with one's supporters.
4. often Faith Christianity The theological virtue defined as secure belief in God and a trusting acceptance of God's will.
5. The body of dogma of a religion: the Muslim faith.
6. A set of principles or beliefs.
[Middle English, from Anglo-Norman fed, from Latin fidēs; see bheidh- in Indo-European roots.]
Fact–noun
1. something that actually exists; reality; truth: Your fears have no basis in fact.
2. something known to exist or to have happened: Space travel is now a fact.
3. a truth known by actual experience or observation; something known to be true: Scientists gather facts about plant growth.
4. something said to be true or supposed to have happened: The facts given by the witness are highly questionable.
5. Law. Often, facts. an actual or alleged event or circumstance, as distinguished from its legal effect or consequence. Compare question of fact, question of law.
—Idioms
6. after the fact, Law. after the commission of a crime: an accessory after the fact.
7. before the fact, Law. prior to the commission of a crime: an accessory before the fact.
8. in fact, actually; really; indeed: In fact, it was a wonder that anyone survived.
Hypothesis–noun,
1. a proposition, or set of propositions, set forth as an explanation for the occurrence of some specified group of phenomena, either asserted merely as a provisional conjecture to guide investigation (working hypothesis) or accepted as highly probable in the light of established facts.
2. a proposition assumed as a premise in an argument.
3. the antecedent of a conditional proposition.
4. a mere assumption or guess.
Data-noun
1. a pl. of datum.
2. (used with a plural verb) individual facts, statistics, or items of information: These data represent the results of our analyses. Data are entered by terminal for immediate processing by the computer.
3. (used with a singular verb) a body of facts; information: Additional data is available from the president of the firm.
Opinion–noun
1. a belief or judgment that rests on grounds insufficient to produce complete certainty.
2. a personal view, attitude, or appraisal.
3. the formal expression of a professional judgment: to ask for a second medical opinion.
4. Law. the formal statement by a judge or court of the reasoning and the principles of law used in reaching a decision of a case.
5. a judgment or estimate of a person or thing with respect to character, merit, etc.: to forfeit someone's good opinion.
6. a favorable estimate; esteem: I haven't much of an opinion of him.
Scientific Method:Scientific method refers to bodies of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning.[1] A scientific method consists of the collection of data through observation and experimentation, and the formulation and testing of hypotheses.[2]
Although procedures vary from one field of inquiry to another, identifiable features distinguish scientific inquiry from other methodologies of knowledge. Scientific researchers propose hypotheses as explanations of phenomena, and design experimental studies to test these hypotheses. These steps must be repeatable in order to dependably predict any future results. Theories that encompass wider domains of inquiry may bind many hypotheses together in a coherent structure. This in turn may help form new hypotheses or place groups of hypotheses into context.
Among other facets shared by the various fields of inquiry is the conviction that the process be objective to reduce biased interpretations of the results. Another basic expectation is to document, archive and share all data and methodology so they are available for careful scrutiny by other scientists, thereby allowing other researchers the opportunity to verify results by attempting to reproduce them. This practice, called full disclosure, also allows statistical measures of the reliability of these data to be established.
Empirical
From Wikipedia, the free encyclopedia
This article is about the concept in science. For other uses, see Empirical (disambiguation).
The word empirical denotes information gained by means of observation, experience, or experiment.[1] A central concept in science and the scientific method is that all evidence must be empirical, or empirically based, that is, dependent on evidence or consequences that are observable by the senses. It is usually differentiated from the philosophic usage of empiricism by the use of the adjective "empirical" or the adverb "empirically." "Empirical" as an adjective or adverb is used in conjunction with both the natural and social sciences, and refers to the use of working hypotheses that are testable using observation or experiment. In this sense of the word, scientific statements are subject to and derived from our experiences or observations. Empirical data are data that are produced by experiment or observation.
The standard positivist view of empirically acquired information has been that observation, experience, and experiment serve as neutral arbiters between competing theories. However, since the 1960s, Thomas Kuhn has promoted the concept that these methods are influenced by prior beliefs and experiences. Consequently it cannot be expected that two scientists when observing, experiencing, or experimenting on the same event will make the same theory-neutral observations. The role of observation as a theory-neutral arbiter may not be possible. Theory-dependence of observation means that even if there were agreed methods of inference and interpretation scientists may still disagree on the nature of empirical data.
Variations
In a second sense "empirical" in science may be synonymous with "experimental." In this sense, an empirical result is an experimental observation. In this context, the term semi-empirical is used for qualifying theoretical methods which use in part basic axioms or postulated scientific laws and experimental results. Such methods are opposed to theoretical ab initio methods which are purely deductive and based on first principles.
In statistics, "empirical" quantities are those computed from observed values, as opposed to those derived from theoretical considerations.
In economics, "empirical" generally refers to statistical or econometric analysis of numeric data. Other forms of observation-based hypothesis testing are not considered to be "empirics."
The use of the adjective empirical, especially in scientific studies using statistics, may also indicate that a particular correlation between two parameters has been found, but that so far, no theory for the mechanism of the connection is known.
Core Beliefs: Core beliefs are your most basic assumptions about your identity in the world. For instance, they depict you as beautiful, or ugly, worthy or unworthy, lovable or unlovable. From these beliefs you create rules to regulate your behavior.
Conspiracy theory: A conspiracy theory is a term that has come to refer to any tentative theory which explains a historical or current event as the result of a secret plot by usually powerful Machiavellian conspirators,such as a "secret team" or "shadow government".
Conspiracy theories are often viewed with scepticism because they contrast with institutional analysis of historical or current events, and are not supported by conclusive evidence.[2] The term is therefore often used dismissively in an attempt to characterize a belief as outlandishly false and held by a person judged to be a crank or a group confined to the lunatic fringe. Such characterization is often the subject of dispute due to its possible unfairness and inaccuracy.
In the late 20th and early 21st century, conspiracy theories have become commonplace in mass media, which has contributed to conspiracism emerging as a cultural phenomenon. Belief in conspiracy theories has therefore become a topic of interest for sociologists, psychologists and experts in folklore.
For an overview on Critical Thinking go to: http://en.wikipedia.org/wiki/Critical_thinking
sources:
http://en.wikipedia.org/wiki/Scientific_method
www.dictionary.com
http://en.wikipedia.org/wiki/Empirical
Thoughts and Feelings-Matthew MckKay, Ph.D, Martha Davis, Ph.D, Patrick Fanning
http://en.wikipedia.org/wiki/Conspiracy_theory
http://en.wikipedia.org/wiki/Autism
Age of Autism Myths and Lies part 1
Age of Autism Myths Part 1
In my opinion organizations such as Age of Autism, Safe Minds, and Generation Rescue should be monitored and fined for every myth they knowingly post to terrify us parents. They are conspiracy theorists who attempt to lead parents of children with autism into 'treating' their child(ren) with unsafe pseudo medical practises.
Being a parent is already frightening with the news bombarding us with kidnappings, child slayings, molestations, bullying on the playground, child drug use etc etc etc. As a parent of a child with autism, (Something I knew next to nothing about before he was diagnosed) I was seeking answers and explanations.
Imagine my shock as I came across websites claiming a vaccinations cause autism! That it is all a great big conspiracy between the gov't, the FDA, the CDC, big pharma etc. So let's look at some of their sensational claims, shall we?
The Myth that vaccines cause autism:
Many of these websites and followers of such are claiming a direct relationship between vaccines and autism. They quite often share anecdotes of how their children were jabbed with MMR and instantly became autistic. This has been scientifically proven as FALSE.
14 studies
This is their 'proof'. Go 'here' to read about the twisting that was done to facts. The website for 14 studies was created by 'generation rescue'. (More to come on that later).
Mercury Poisoning is often quoted as being the reason why vaccines are dangerous.
Mercury Poisoning:
Signs and symptoms
Common symptoms include peripheral neuropathy (presenting as paresthesia or itching, burning or pain), skin discoloration (pink cheeks, fingertips and toes), edema (swelling), and desquamation (dead skin peels off in layers).
Because mercury blocks the degradation pathway of catecholamines, epinephrine excess causes hyperhidrosis (profuse sweating), tachycardia (persistently faster-than-normal heart beat), mercurial ptyalism (hypersalivation) and hypertension (high blood pressure). Mercury is thought to inactivate S-adenosyl-methionine, which is necessary for catecholamine catabolism by catechol-o-methyl transferase.
Affected children may show red cheeks and nose, erythematous lips (red lips), loss of hair, teeth, and nails, transient rashes, hypotonia (muscle weakness), and photophobia. Other symptoms may include kidney disfunction (e.g. Fanconi syndrome) or neuropsychiatric symptoms (emotional lability, memory impairment, insomnia).
Thus, the clinical presentation may resemble pheochromocytoma or Kawasaki disease.
First, let's compare this to the signs of autism in a child:
- Lack of interest in toys
- Spinning objects
- Placing objects in lines
- Content with being alone
- Flapping hands
- Excitement in unusual situations or with different objects
- Lack of affection
- Appear not to be aware of surroundings
- Does not respond to their name
- Unusual sleeping patterns
- Show distress for unexplained reasons
- If verbal, repetitive language (echolalia)
- Resisting change in routine (driving a different way home)
- Displaying outbursts
- Sensitive to textures (clothing, food, etc.)
- Show prolonged interest in one object
Now, the clincher: Most Vaccines have not contained any form of mercury since 2007.
You can go here to see the chart. That link also explains the difference between mercury, ethylmercury and methlymercury. If you are concerned about vaccines, PLEASE read it.
Studies that show vaccines are NOT linked to autism:
HERE
Autism Epidemic:
These psuedo-scientists claim that we are having an autism epidemic.
An epidemic is:
In epidemiology, an epidemic (from Greek epi- upon + demos people) occurs when new cases of a certain disease occur in a given human population, during a given period, substantially exceed what is "expected," based on recent experience (the number of new cases in the population during a specified period of time is called the "incidence rate"). (An epizootic is the analogous circumstance within an animal population.) In recent usages, the disease is not required to be communicable; examples include cancer or heart disease.
Yes the numbers of persons being diagnosed with autism has risen.
As per WIki:
The epidemiology of autism is the study of factors affecting autism spectrum disorders (ASD). Most recent reviews of epidemiology estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for ASD;[1] because of inadequate data, these numbers may underestimate ASD's true prevalence.[2] ASD averages a 4.3:1 male-to-female ratio. The number of children known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved,[1] and as-yet-unidentified contributing environmental risk factors cannot be ruled out.[3] The risk of autism is associated with several prenatal and perinatal factors, including advanced parental age and low birth weight.[4] ASD is associated with several genetic disorders[5] and with epilepsy,[6] and autism is associated with mental retardation.[7]
See Full page HERE
Age of Autism and Generation Rescue followers counter this information with comments such as:
"Then where are all the autistic adults?" and "When I was in school there were no children with autism!"
Lets look at these comments and pretend they are reasonable.
Many autistic adults are not independent. They live with family, or in group homes for the disabled, or in institutions etc. Of the autistic adults that are high functioning and independent, they are integrated successfully into society. Some are famous, some are not. Many of the autistic adults that are independent have become somewhat asymptomatic. That is to say, they have learned what behaviors are unnexpected, they have learned to make small talk, conversational turn taking. They 'stim' less than they did as children. I encourage you to research this! The wiki has numerous pages explaining autism, you can search amazon and see the autistic authors, search news and court cases for mention of autistic adults, and search your phone book for outreach and support programs for adults with autism.
As to the lack of children in school with autism 20 + years ago...
Children with disabilities, particularly developmental disabilities were not, as a general rule, in the public schools.
The laws have changed. In North America schools are required by law to provide an education to those with special needs.
Previously, these children, if they attended public school, were in the 'special' classroom. More likely, they were in private schools for children with disabilities, or at home and/or institutionalized.
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